Samuel

After we’d waited a year to bring our son home you’d think I’d be prepared for when we finally got travel approval, however that was not the case. The day after we received approval I was flying to Houston for three days for a heart cath. Cole and I were busy searching for flights, changing appointments, rearranging his work schedule, making childcare plans, not to mention school beginning the following week. It was a CRAZY week filling out 2 million back to school papers for 9 kids, packing, worrying about my mom coming to stay with our 3 littles and two foster daughters, arranging some help for her and having a few surprises thrown in like car trouble and Traye having to have his two front teeth removed due to an accident and all of that left me staying up way too late packing last night but I got about 2 hours of sleep before the alarm went off. Who cares… I’m gong to get my son!

my brave boy

Back to school! Thankyou Trinity for loving my children so well and partnering with us to mature them spiritually, emotionally, physically and intellectually! It’s going to be a great year!

being silly as usual

silly boy

wuz up

mug shots

Ist dao of Middle school

did ya’ll coordinate those outfits?

!st dao of midle school, 7 classes and lockers!

Sweet teacher Mrs. Handey

sweet friends

We left home about 4:45 headed to Birmingham. We had an 8am fight to Detroit then on to Beijing. About half way to Birmingham my mom called to say that Delta had called and delayed our flight 2 hours to Detroit which would cause us to miss the flight to Beijing. We immediately got on the phone, actually 3 phones calling Delta. We arrived at the airport and still had not had an agency representative answer. We stayed on the phone and waited in line at the gate. We finally made it to the front of the line ( over 90 minutes on hold and still no agent)> He tells us the system has automatically rebooked us for a similar schedule the following day. Well, if you’ve ever been in the path of a mama trying to get to her child then you can only imagine my feelings. He said that was really the only option so we decided to wait for a ‘Red Coat” to see if he might could help further because mama bear was about to go cray cray on this man telling me to come back tomorrow when I was sure tomorrow would have brought the same delays. I was adamant that we were getting somewhere today that would allow us to be where a flight to Beijing departed.

After waiting over an hour the Red Coat finally showed up. Cole was telling me to be salt and light and how kindness gets you further. I thought he had that covered pretty well so I went forward with the mama passionate about getting to my kids and positive that there was a way to get us somewhere today. When he walked off to see what options he could find I assured my kids we had shown him the best of both world: kind, patient and cooperative as well as making the urgency clear in getting to my son! In the end it seemed to be my mama’s passion that motivated him the most 🙂 and he came back with a plan for us to leave for Atlanta, catch a flight to Tokyo ( at least it’s Asian), then Beijing then on to Zhengzhou, Henan. We were originally scheduled to get into Zhengzhou after Midnight and then get Jim that morning at 9:30. Due to the delays and flight changes we knew we’d miss the last flight out go Beijing for Zhengzhou that we had been scheduled for but off we went, and figured we’d figure out a plan when we get there.

Our flights were pretty uneventful. We originally and all the kids lined up in a row all with wind seats so they could have a place to rest their head on the 15 hour flight but that was no more, but WHO CARES…. we were on a plane getting closer to my son!

What do yu mean we’ve automatically been re booked for tomorrow and there are no other options…..there are always options, you sir were just no help !

waiting on the Red Coat

Red Coat trying to find us some options so mama bear doesn’t go cray cay and end up escorted out by the two nice policemen that seemed to stay right beside us.

lets get this show on the road

what a morning

artifical twins about to be artifical triplets (three 12 year old boys)

be careful sleeping by me 🙂 I have to keep myself distracted while flying

Thank you for the many prayers lifted up for Samuel over the last year. They have been felt by us and heard by our precious Lord!

Once again we are coming home without surgery…..Here is what our last 36 hours have been like.

Yesterday morning I kept the room dark, trying to get Samuel to sleep as late as possible. It worked until about 8:30. He immediately wanted to eat, but seemed to understand that he couldn’t. He could still have water until 10, so that helped. We got ready and headed out to explore to keep his mind off food. At 11:45 we arrived at the hospital. It was 1:45 before they took him from my arms and back for anesthesia. Around 4:30 Dr. Nugent came and discussed the cath. with me. He was very pleased with the results he got, but said the surgeon, Dr. Fraser, would decide the treatment plan. The plan was for us to be in recovery until 7:30 and then go back to the hotel, but his left leg kept bleeding so at 7:30 we knew we had to spend the night, but they didn’t get a room ready for us until after 10 pm. We were tired and I was dying because I couldn’t use a cell phone in the hospital and didn’t have computer access. Finally my mom, in a panic, tracked us down in recovery and I was able to give her the details to pass along.

Dr. Nugent came by at 7am to check the bleeding and said we were fine to go. We were supposed to meet Dr. Frazer at 8 in his office upstairs to discuss his plan and then be done for the day. Our nurse kept waiting on discharge orders and by the time she finally understood Dr. Nugent had given her verbal orders and no written ones were coming, Dr. Frazer was in surgery……SO, instead of going to the childrens museum, as planned, we sat in our hospital room until 5 pm, when Dr. Fraser finally finished with surgery for the day. We were dying of cabin fever. It is very difficult to keep a child entertained in a hospital room all day when he’s not actually sick or recovering.

Dr. Frazer discussed his anatomy with me in detail and explained why SAmuel is a difficult case. There are several different treatment options, none of which are guaranteed to work, and each difficult to predict the outcome. He wants to discuss his case in their team meeting on Monday and call me early next week with his suggested treatment plan. I told him I would be lifting them up in prayer as they discuss all options and come to a conclusion. Please join me in praying for their wisdom.

We will be coming home Thursday!!!

Once again, the rollercoaster continues, but we are enjoying the ride!!!! Your friendship, emails, prayers, and support have and continue to make such a difference. You have each been such a blessing in our lives.

We began our morning at 9am with an echo. Samuel was very hesitant and cried for the first 5 minutes and then eventually calmed down and even fell asleep. It was a good thing because it took about an hour. We then went and met with the cardiologist, Dr. Nugent. Samuel once again cried just seeing a doctor, but eventually stopped and I was able to hear what he was saying. He explained more than I could comprehend, but I feel confident in his ability to determine which route is best for Samuel. Depending on how the cath. goes, he said he might possibly be able to skip the tightening of the band and go straight to the Fontan procedure. This was news to me since I thought we were 2-3 years away from that, but we won’t know anything until after the cath tomorrow. We were scheduled for the cath at 8:30, which was great because he can’t eat after midnight. BUT they called and needed to add a case so we were bumped to third and don’t go until noon. Please pray that Samuel’s hunger will subside, because he LOVES to eat, especially breakfast. It could be a long morning.

We finally finished everything around 1 pm. He has a monitor on that he has to wear for 24 hours. We came back to the room to reorganize and then headed off to the park and the Houston Zoo. Samuel loved riding the metro train and it was a beautiful day to be outside. We had a great time, but on the way back to the hotel he wanted to slide at a park. While there he told me he had to use the bathroom. I recognized the urgency and took off in a sprint, but we didn’t make it in time. Fortunately it was contained in his underwear and we just discarded them and put on his jeans. We made our way back to the hotel and had taco’s for dinner. When we got to the room he kept complaining his stomach was hurting (a first for him). I kept putting him on the potty, but he only urinated. The last time he was crying and holding his stomach I held him in bed and he fell asleep. Hopefully it was his dinner disagreeing with him and nothing more. Please pray for a good nights rest and no pain for him.

Prayer requests
1. For Samuel to stay healthy and get a good nights rest

2. That Samuel will either sleep until noon or for his hunger to subside until dinner

3. Protection for Samuel during his cath

4. Wisdom for Samuels dr’s. as they determine the next course of action.

March 1, 2006 Today Samuel got his last three cavities filled and tomorrow we head to Birmingham to see Dr. Grant about his cleft palate. He has a cough, so pray it goes away and doesn’t delay his surgery again! We leave Sunday night, the 5th, for Houston. I will post updates as we know more!

1-31-06 The hospital called today and rescheduled us beginning March 6th, with cath on 7th and surgery either the 9th or 10th. Hopefully he will be over this sickness and we can avoid any others.

As of right now, Sat. January 28th, it looks as though our trip will be postponed. Samuel ran a temp. of 103.4 Thursday night and a has has a milder temperature every day since. He also has a cough, which you do not want when your chest is going to be cut open. Dr. Frazer is going to make the call on Monday. We’ve been on medication treating him for Bronchitis since Friday. Looks like Gods timing for surgery is different from that of Texas Childrens Hospital. So, who knows what we will be doing.

Dr. Chuck Frazer, at Texas Children’s Hospital in Houston will be doing Samuels 2nd heart surgery. We will be arriving in Houston on Jan. 31st. Our schedule, as of now is:

Tuesday, Dec. 6th
We are coming HOME!!! Dr. Mee just called and thinks we should have surgery in 4-6 weeks, so we will be headed to Texas to see a Dr. Chuck Frazer. He trained under Dr. Mee and he has made me feel comfortable headed into his care. All in God’s tiimg!

Monday, Dec.5th
We met with the cardiologist this morning who, after looking at chest x-ray, echo, felt there was no need for a cath. tomorrow and that we could possibly move surgery up to tomorrow, instead of Wednesday. We went back after lunch to meet with Dr. Mee. He said the folds will not be completely smoothed out until about the 3 month mark and if we tighten it some more now and it loosens more, that Dr’s might be hesitant to do a 3rd surgery. I trust him and am completely confident in whatever he ultimately recommends. I was shocked though, because this was never mentioned previously. Upon being discharged last time, Dr. Latson said we needed to have it done within the next three months and was even willing to schedule it the Friday or Monday following his first surgery. Dr. Latson, the cardiologist we saw last time, has been on vacation and will return in the morning. Dr. Mee will meet with him after he finishes his morning surgery and then call us with their decision. So, it looks like we will possibly be headed home on Wednesday and head to Texas for surgery in a couple of months.

Sunday, Dec. 4th
Samuel & I are headed back to Cleveland tonight. He is scheduled for surgery on Wed., Dec. 7th. He will be Dr. Mee’s last surgery beffore he retires. We are so grateful he agreed to add Samuel to his case load before he leaves. I am still, however, praying that when we do pre-op tests on Monday and a possible cath. on Tuesday they find that there is no need for surgery because God has tightened the band, resulting in the perfect flow. Whatever the case, I will be clinging to our precious Lord for strength and comfort. Thank you all for you continued prayers and words of encouragement. You have no idea what a difference you make! I will continue to update as we learn more (and I have time near the computer in the hotel room). I will have my cell phone with me and you are welcome to call (334-546-2491). My Mom will be coming Monday night to stay with us during and after surgery so that we can trade out getting some sleep. Please pray for our safe travel and Protection of SK, Elizabeth & Jon Cole Physically and emotionally while we are away!

We are back in the hotel room with Samuel, but not with the greatest news. Dr. Latson came by as we were getting our discharge orders to say that the echo showed that the flow has been reduced by half, but we need greater reduction to reverse the damage done and become a candidate for the fontan procedure. So, he must have surgery again to go in and tighten the band. Dr. Mee left the country Friday after Samuel’s surgery and will not return until next week. He has three surgeries scheduled on the 7th and 8th before retiring on the 9th. He has told them not to schedule any more for him, but they think one of the three that are scheduled will be cancelled and that he might be willing to add Samuel that Wednesday or Thursday before he retires. We will not know his answer until next week, but have decided to wait on him, versus using another Dr. and doing surgery on Friday. So our plan is to return Thursday morning after our check-up with Dr. Latson on Wednesday and wait to hear Dr. Mee’s answer. Please pray that he will be willing to add him, if that is God’s will. Samuel is doing much better than me. He is glad to be back in the room and we are seeing a more playful side of him again. I can’t stop crying though. I just hate for him to have to go through this whole process again. I am looking forward to seeing SK, Jon Cole & Elizabeth though! That brings a smile to my face. We should be in B’ham Thursday morning around 9:30 am, so save us some Turkey!!!

Monday, November 21, 2005 ; 11:15am
We had a great night, his fever is gone, and he looks better and better. The Dr’s came by around 9:30 and said they see no reason to keep him since he is doing so well. They plan to discharge him today and we will come back in Wednesday for a check-up before returning home. Hopefully we can get a flight Wed. night or Thursdasy morning. When I left to come back to the room we were still waiting to do an echocardiogram to be sure everything still looks good. Dr. Latson said we will need to do another heart cath in about 2 months to check the flow because he’s not sure it’s tight enough. If it’s not, they would have to go back in and tighten it some more. Please pray that it will be tight enough and working as it’s supposed to. We’ve had a great experience this time (as well as possible for opening up your childs chest) but I have no desire to do it again anytime soon. This too is all in God’s hands.

Sunday 7 pm
When I returned this afternoon, Samuel was sleeping. The nurse said he could get up and walk, so Cole walked with him and then pushed him around in a little tikes car for awhile. He had eaten a great lunch and then napped. After his nap I gave his a sponge bath and put some of the clothes we brought on him. We even got to see some smiles today. We went for a little walk and then I pushed him in the car and we toured the hospital for about 30 min. When we returned, the nurse came by and said that we could possibly be discharged sometime tomorrow, depending on how his chest x-ray looks in the morning. We were shocked. We would stay in our hotel room for a couple of days and then they want to see him for a check up before we return home. We are so excited! I came to the room to take a little break before returning for the night. I had planned on posting some new pictures, but left the camera. It will have to wait until my next trip back to the room, which will be sometime in the morning. Samuel is doing so well.. Once again, he is proving what a fighter he his. He is going to have a mighty testimony to share of how our mighty God worked MANY miracles in his precious life.

Sunday 12 noon
Once again I have seen God answer prayer, in an unexpected way. I have been praying for Samuel to cooperate with the Dr’s. and behave in the manner that would help him heal the fastest; I didn’t expect this to include his self removal of his intubation tube at least 8 hours before they were even going to evaluate whether he was ready or not. While it scared me to death and resulted in little sleep for me, we were moved off of the PICU floor yesterday afternoon. This means they feel his greatest risks are past us! Praise God!!! We are now in the “quad”. It is an area behind the nursing station that has eight beds and they can keep a close eye on him. I spent the night there with Samuel last night. It was comfortable, but we got little consecutive sleep due to checking his vitals, getting medicine, his and others monitors beeping, and general hospital noise. He still has a fever, which could be a sign of infection. This scares me, but they say it is still within a “normal” time frame for him to have fever, so they haven’t begun to worry yet. They did draw more blood this morning, so hopefully they can tell from it if there is some infection to persue. His is on an antibiotic, so it should help. Before I came to the room so shower, they removed his oxygen, which he constantly tried to remove, so he is happier. The said they were going to take him off the morphine today and then be able to unhook the IV from the machine and then he will be able to move around more freely and behave more like himself since he won’t be medicated. He doesn’t seem to be in any pain, but he is not happy about his fluid intake being so restricted. He is only allowed 1 oz. of liquid every hour. He cries a good bit when I tell him he can’t have any more, but this too is good, because it clears his lungs out. He is allowed to eat, and he ate well last night (applesauce, mashed potatoes, a little chicken, cheerios, some yogurt, pudding, bread), but he wouldn’t eat his breakfast. Hopefully Cole is having better luck with lunch. I came back to the room to shower about 9:30 and then took a little nap, and now fixing to head back over. Thank you all for the prayers, encouraging words and support. You have no idea how much it means. Love you all!!!!

Saturday 1:15 am
So much for a good nights sleep. Just got phone call from Samuel’s nurse. While she was checking on the little girl across the hall, Samuel woke up and pulled is intubation tube out. So much for those arm restraints! She said he is doing fine, but I am not. I know it had to hurt and I am mad at myself for letting them talk me into leaving. I am headed there now and will not be leaving anytime soon!

Friday 11:30 PM
We have returned to the room to try and get some sleep because they will keep him sedated all night. The Dr’s will meet at 8 am to determine if they will remove the intubation tube or not. He was given a combination of 3 medications to keep him sedated, but was waking up every 30 min. so they moved to something stronger to keep him out. He has a slight fever still (101.5) which they say is normal after surgery. After 24 hrs they will start researching why, if it has not gone down. As you can see from the pictures, it is’t a pretty sight. I just pray he rests well, his body reacts well to the band, his fever returns to normal, he handles the removal of the intubation tube well, he feels little pain, and that he will not remember this tramatic experience! I also pray for some rest, I am running on very few hours, and once the intubation tube is removed one of us will be bedside 24/7. I also have a sore throat and some chest congestion, this is not the time to be sick, so I pray this is all miraculously gone in the morning! Love you all!

Friday 12:30pm
Dr. Mee said the surgery went well and he was able to get the ring pretty tight. Samuel is in ICU and they will keep him knocked out until in the morning, when they will gradually ween him off some of the drugs. He will probably remain in ICU 2-3 days. We are able to stay in the room with him. He looks good, even with all the tubes coming from every inch of his body. I will try to post some pictures tonight. Pray that his body will adjust as he comes off the medication and the pressure doesn’t increase, or they would have to go back in and loosen the ring, and since Dr. Mee leaves for a 2 week vacation tonight, I pray there are no complications!

Thursday 11:00 pm
I am physically, emotionally and mentally exhausted, so I will give a quick update before hitting the sack. We have to be at the hospital in the morning at 6:15 am, with surgery planned for 7 am. We have had a wonderful experience here. Everyone has been so helpful and comforting. We met with Dr. Mee this afternoon. He and Dr. Latson, who did the heart cath, worked together to determine our options. Having only a single ventricle, too much blood has been flowing through his lungs, 4 times as much, to be exact. As a result, the body’s natural defense is to build up the muscle around the walls through which the blood flows, thus resulting is less flow. As it gets thicker and thicker, his chances for intervention and options lessen. Normally by 3 1/2 years of age, the walls would be too thick to consider surgery to refeverse. Going in to the heart cath the dr’s were expecting that to be the case, but were pleased to find that they are at a level we can hopefully reverse the damage some. The will do open heart surgery and place a ring around the vessel/ artery (not sure exactly) that carries the blood to the lungs. Hopefully the muscle will respond to the oxygen and reduce in size. He will gradually get bluer and bluer until his oxygen saturation reaches a level in the low 80’s and then we would move to the next step of treatment. He will hopefully then be a candidate for fontan surgery. I’m not exactly sure what this is, but plan to research it when I have more time near a computer. It is a miracle that we have this option. If the walls would have been too thick to do the ring surgery, which they were expecting to find, our only option would have been a heart and lung transplant down the road. We were told the success rate, if these organs became availible, was 40-50 percent and then only a 20 % rate of success for them taking. We are so thankful that this is not our only option. As with any surgery, there are many risks, so please praw the surgery is successful, uneventful, no infection, quick recovery and strength for us all as wego through this. It has been overwhelming to imagine them sawing his little chest open, but I continue to seek strength and comfort from our ultimate healer, our precious Lord and Savior. We have had a wonderful day with Samuel, and a sweet time of prayer over him tonight. Thank you all for your many prayers. I will update as soon as I can. The only internet service is in our room, where we will spend little time. We can be reached any time on our cells and Cole’s Blackberry (cole.portis@beasleyallen.com) I miss you and love you very much SK, Elizabeth & Jon Cole. I hope someone is giving you huggs and kisses from me every day! Have fun at the Thanksgiving Feast …

On October 10th Samuel saw Dr. Colvin at UAB. He did an echocardiogram and chest x-ray while we were there. It was determined that Samuel has a single ventricle, double inlet to the left, transposed great vessels but no obstruction in outflow to the aorta or pulmonary artery. They think his ductus is patent as well. He has saturations that are about 90% and he is not in overt heart failure which suggests that he has at least some restriction in blood flow through the distal pulmonary vascular bed and almost certainly has important pulmonary vascular disease at this point. Dr. Colvin is not sure that surgical intervention is in his best interest. They want to further evaluate his physiology in the cath. lab. If they determine his ductus is patent and that he has fairly brisk pulmonary flow, it may be possible to consider a left thoracotomy with ductal ligation and pulmonary artery banding as a prelude to later interventions to try and deal with the single ventricle. His anatomy is such that one could consider a septation operation for his ventricle though these are infrequently done in this area. They doubt he would ever be a candidate for a Fontan operation.

The problem with thoracotomies or sternotomies for Samuel is that they may make him a less optimal candidate foe eventual heart/lung transplantation. They will keep this in mind as we make plans for any intervention.

For now we have started immunizations with our pediatrician, Dr. Jim Rabon. On Friday, Samuel got a flu shot, three immunization shots and blood drawn. He was not a happy boy, but recovered quickly. Once his blood work returns and we know his renal function is normal, he will begin taking Digoxin to help his heart pump stronger.

We have great respect for Dr. Colvin and plan for him to be our local cardiologist, but felt we should get a second opinion.

We have been fortunate to get an appointment with Dr. Mee, a surgical cardiologist at the Cleveland Clinic in Ohio. Currently, our appointment is set for November 15-17, 2005. If he has a cancellation, it could be sooner. Blood work will be done on the 15th, heart cath. on the 16th and if surgery is needed it will be done on the 17th. Dr. Mee is considered one of the top cardiac surgeons in the world and will be retiring shortly after our visit. God opened this door thru Dr. Robert Savage, a family friend and co-worker to Dr. Mee. I continue to put our trust and hope for healing in the ultimate healer, God! We will keep you updated if anything changes. Continue to pray for healing of his heart, weight gain (he now is at 23 lbs.), reassurance in his mind that we are not going to leave him. Thank you all for your continued support and prayers.